Blog: Research

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Has the pandemic made your sleep worse?

22 June 2020

COVID-19 has caused disruption to many aspects of our lives and sleep is no exception. In a recent survey carried out by researchers at King’s College London and Ipsos MORI, two thirds of people report that their sleep has got worse since lockdown in March. Around half of the population find their sleep more disturbed and just over one third of people surveyed are having more vivid dreams than normal.

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Support a student with narcolepsy

10 March 2020

Can you support a fellow person with narcolepsy in their studies?

We have been approached by a Year 12 student, with narcolepsy, who has decided to focus their Extended Project Qualification (EPQ) on evaluating the effectiveness of treatment for Type 1 narcolepsy (narcolepsy with cataplexy).

All results will be anonymous so please spare some time to answer this brief questionnaire and provide data for their very worthwhile project.

https://www.surveymonkey.co.uk/r/YN6HY9L

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Narcolepsy Charter launches

12 August 2019

We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.

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Call for national neurology plan following largest ever survey

10 July 2019

People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

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Narcolepsy UK attend Narcolepsy Advisory Board in Zurich

18 May 2019

In Zurich this week, Matt O'Neill took part in a Narcolepsy Advisory Board to enhance understanding of narcolepsy from the patient perspective.

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Neurological Patient Experience survey (England)

20 December 2018

In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.

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Are you in Lincolnshire? Can you help?

11 January 2018

Do you live in Lincolnshire? Could you help shape the future provision of medical care for neurological conditions like narcolepsy in your area?

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Disability Rights UK survey on PIP problems

24 March 2017

Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).

The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.

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